Just prescribed Clonazepam - what should I know?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
meiatflask
Posts: 22
Joined: Sat Aug 10, 2019 10:29 pm

Just prescribed Clonazepam - what should I know?

Post by meiatflask »

Ok, I am trying my third prescription medication after struggling with problematic side effects on the first two. Both were effective at eliminating RLS symptoms, but even after much playing around with dosages, I could not live with the side effects. Ropinirole put me to sleep, and gabapentin made me loopy, plus made my hands and feet tingle, and gave me headaches.

So my doctor prescribed Clonazepam. Start at 1mg, increase to 1.5 to 2 max as necessary. As I did not see this drug in the RLS organization literature, I don’t know anything about it, except the limited info from google, which is not RLS specific.

So, what should I know, how effective is it, how common is it, what are the concerns, do the dosages sound right? I plan on taking it about 2 hours before going to bed, just like I did gabapentin; does this sound right?

Thanks,

Bill

Icantsleep
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Re: Just prescribed Clonazepam - what should I know?

Post by Icantsleep »

How much ropinirole were you taking?

Could you not lower the dose a bit and still get RLS relief?
How long did you give each of these medications to adjust to their side effects ?

If you've never taken clonazepam, 1mg increasing to 2mg is going to make you very relaxed , but it wont do much for the rls itself
You may even feel it makes you too relaxed
The dose seems a bit high to me .

Do you have significant anxiety ?

I started taking clonazepam 26 years ago for anxiety and never stopped
I'm stuck on 0.75mg
It probably calms me down a bit and helps with getting me to sleep, but does essential nothing for the urge to move

Perhaps it has been prescribed to you to ease your mind about side effects in general

How long have you had RLS ???

I'd get your iron checked
Check for other deficiencies
Eliminate any other secondary triggers (read up on secondary RLS)

Clonazepam will not treat the source of your RLS

Make sure you know why you have RLS before you become reliant on a benzodiazepine (clonazepam)

Icantsleep
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Location: Ottawa Canada

Re: Just prescribed Clonazepam - what should I know?

Post by Icantsleep »

Sorry , I didnt see (or process) that you mentioned you had played with doses

Speaking for myself, but also relevant to your situation, is that my anxiety is definitely heightened as I await an important appointment with my specialist tomorrow

Mentally, I feel what you are feeling when it comes to trying to treat this disease
That's where clonazepam can help

RLS itself and the medications often needed to help treat the disease can lead to a long , very taxing , very lengthy ride

If I were you I'd be open to taking clonazepam while you take time to better comprehend your RLS and formulate a plan to deal with its symptoms and side effects
(Perhaps you already understand the source , but just in case you dont )

I would hope 1mg would be adequate
0.5 mg in combination with something else would be more ideal
Quite honestly, if you are taking clonazepam strictly to cover RLS symptoms, I'd suggest you stop before you develop a benzodiazepine dependance for no reason whatsoever.

You could dabble in medical marijuana perhaps
Even Kratom if you were trying to stay natural

You could try a dopamine agonist at a very low dose with low dose clonazepam

.... just make sure you dont have a simple fix first like upping your iron or vitamin D or magnesium etc etc ...

Polar Bear
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Re: Just prescribed Clonazepam - what should I know?

Post by Polar Bear »

meiatflask - to clarify, you have tried Ropinerole and Gabapentin but didn't like the side effects.

This paragraph is an extract from
""Guidelines for the first-line treatment of restless legs syndrome/Willis-Ekbom disease, prevention and treatment of dopaminergic augmentation: a combined task force of the IRLSSG, EURLSSG, and the RLS-foundation.""

As a means to prevent augmentation, medications such as α2δ ligands may be considered for initial RLS/WED treatment; these drugs are effective and have little risk of augmentation. Alternatively, if dopaminergic drugs are elected as initial treatment, then the daily dose should be as low as possible and not exceed that recommended for RLS/WED treatment. However, the physician should be aware that even low dose dopaminergics can cause augmentation. Patients with low iron stores should be given appropriate iron supplementation. Daily treatment by either medication should start only when symptoms have a significant impact on quality of life in terms of frequency and severity; intermittent treatment might be considered in intermediate cases.


You will see that a drug such as Gabapentin is suggested for initial treatment. At what strength did you start with your Gabapentin, did you titrate up to try to find the dosage that would work for you. Did you give it enough time for the 'loopy'' side effects to pass. Also, although Gabapentin did not suit you it is possible that Pregabalin/Lyrica may be ok.
Ropinerole made you sleepy...... I'm not a fan of the DA drugs and at the moment I'm weaning myself off from Ropinerole. However, in a low dose they can work effectively. Did you give the Ropinerole eough time to overcome the side effects of sleepyness.
Clonazepam is a benzo and can work for rls for some people.

An Iron Infusion is another possibility for treatment.

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipexole/mirapex or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

Indeed your care provider should check your Ferritin before prescribing a DA drug such as Ropinerole.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Stainless
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Re: Just prescribed Clonazepam - what should I know?

Post by Stainless »

I've been on Clonazepam for about 25 years and it seems to be the only thing that works for me. First you should know that benzodiazepines are addictive. Doctors don't use that word but I do. After 20 years took me six months to get off 2 mg. and I still had effects for six more months, maybe longer. Then as a last resort after a year off I went back on 2 mg. clonazepam because RLS was making me miserable. I think getting off it made things worse and I've had to add Lyrica for physical pain in my thighs, but that's another story. I would start at 1/2 mg and keep the dose as low as possible and take it 15 minutes before bed. If you decide to stay on it you will probably have to increase dose over time. You should also know that use of benzodiazepines has shown to contribute to memory loss in some studies but other studies don't show this. I took 1/2 mg. for about 10 years and slowly went up. My doctors now won't prescribe over 2 mg but I was on 3 for about a year. I never had any side effects on any dose, but think everyone is different. I think gabapentin is the safest way to go and it helped me get off clonazepam, but it could not provide enough relief for me. I tried ropinerole and then extended release but soon they were not effective. Best of Luck

meiatflask
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Joined: Sat Aug 10, 2019 10:29 pm

Re: Just prescribed Clonazepam - what should I know?

Post by meiatflask »

Thanks for all your comments. Several questions asked about my history.

No anxiety issues. Never had any. The Clonazepam is strictly for RLS.

As to iron and minerals. I have been taking magnesium, e, niacin, a multi, folic and baby aspirin for a decade or more, long before I developed a RLS symptoms. My ferritin was checked in August at 60. I added oral iron 2x65 plus c, taken on an empty stomach. I will recheck ferritin in January, when some insurance changes make it affordable. But symptoms have not changed since adding oral iron.

As to triggers, I have read, researched, recorded in a diary every thing I could think of. And except for sitting long periods in soft chairs with pressure on the legs, no real correlation. ( I am an engineer and ran a statically significant study over about 6 months). No issues with alcohol, caffeine or any of the common triggers.

As to other medications. I started gabapentin at 300, worked up slowly (over 6 weeks) up to 1200. It was like a light switch going on/off. At 900, almost no relief from RLS symptoms, and minimal side effects, at 1200, perfect relief of symptoms, but side effects intolerable. Went back and forth for a couple weeks (trying 1000 also) and the effect was perfectly repeatable.

As to ropinirole, that was the first one I tried. Was on it for nearly 18 months. Started at 1/4, increased slowly to 1. Pretty effective at first, but as time went on, things changed. Came across the same on/off behavior between 1/2 and 1. Literally could not stay awake for a 30 minute tv show after dinner. Tough on the marriage, especially when wife likes To go to the movies, theatre, etc. near the end, I backed off to 1/2 one final time and the drowsiness did not go away. Spent many months trying to get this to work.

Doctor discussed trying mirapex, but as this is the same class as the ropinirole, he thought that best to try the Clonazepam first.

Last night had first Clonazepam, at 1mg. Did not get drowsy, and only slight leg twitching, but I felt awful in the morning- bad headache and a bit of loopiness. I’ll back down to 1/2 tonight and see how that works for 4-5 days. Have some travel this weekend, which will screw up my schedule and data collection as to what is really happening, both in terms of symptoms and side effects.

The addictive comment by stainless is the most concerning for me.

Also, Lyrica and other name brands are currently out of the question for insurance reasons. Got to stick with all the cheap generics for the time being.

Rustsmith
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Re: Just prescribed Clonazepam - what should I know?

Post by Rustsmith »

With respect to the mention of "addiction", it is a matter of semantics, but the semantics are important these days with the furor that is currently sweeping the world about opioids.

Addiction is where a drug causes psychological dependence on the high that is produced. An addict with do anything to get that next high, including harming family members.

Dependence is where a drug causes physical symptoms (withdrawal) when a dose is missed. Addicts can also be dependent upon a drug. You would probably only experience dependence on Clonazepam in the same manner as those of us who take opioids for our RLS are dependent upon those meds.

As for the progression that your doctor is taking with your treatments, it sounds like (s)he has a pretty good grasp of the current approaches for treating RLS. If Clonazepam doesn't work out for you, then your next (and currently final) step would be a low dose of an opioid.

Finally, just out of curiosity, what kind of engineer? As my logon ID hints at, I am a retired metallurgical engineer.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

meiatflask
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Re: Just prescribed Clonazepam - what should I know?

Post by meiatflask »

As am I, although the department became “Materials” during my time there. BS Purdue 1981

Rustsmith
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Re: Just prescribed Clonazepam - what should I know?

Post by Rustsmith »

Ours became Metallurgy, Materials and Biomedical Engineering well after I left. They are a long ways away from the mostly extractive department supported by the southwestern US copper mines, smelters and refineries. Thankfully, I ended up in the oil and gas business. Better pay and no union strikes. BS/MS UT El Paso 73/74.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX
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Re: Just prescribed Clonazepam - what should I know?

Post by QyX »

I think it is so sad that patients basically get forced to take Clonazepam as RLS medication even in cases where opioids haven't been tried yet.

While Clonazepam can be effective in some cases for some patients, even with the urge to move, the side effects of long-term Benzodiazepine use are significant. And stopping drugs like Clonazepam is a real mess, even when you only took the medication for several months.

Potent opioids are a far superior method of treating RLS, especially because tolerance is less an issue compared to classic chronic pain.

And to keep the opioid dose, antiepileptics like Carbamazepine or Oxcarbazepine can be prescribed for RLS. They help with pain and the urge to move, even without opioids present. I had much better effects with those older antiepileptics than I had with Gabapentin and Lyrica. An interesting aspect of all of this is that Clonazepam is considered a antiepileptic, too has some unique properties most other Benzodiazepines don't have, which seems to make Clonazepam more effective for RLS than other Benzodiazepines.

Personally I've taken Clonazepam for a total of about a year and I would not recommend ever starting on it as long as there are other options available.

Kratom is a very good alternative when you can't get a prescription for opioids. And for insomnia medical Marijuana / THC is much much better than Benzodiazepines, especially when used long-term.

Benzodiazepines can become a trap. Only a small group of people tolerate those drugs long-term. Be very careful with it!

Oh, and as others already said: 1 mg seems like quite a high starting dose. This dose could potentially cause heavy sedation or some weird euphoric state. I've seen and experienced quite some crazy stuff on Clonazepam. 0,25 mg to 0,5 mg would have been a way more responsible starting dose.

Stainless
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Re: Just prescribed Clonazepam - what should I know?

Post by Stainless »

I was out of line labelling clonazepam as addictive as I have been told before. "Stopping drugs like Clonazepam is a real mess" is more accurate.

And I too am an engineer, Ocean Engineering FAU '82. Maybe there is a link there. Our brains are wired differently.

Rustsmith
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Re: Just prescribed Clonazepam - what should I know?

Post by Rustsmith »

Stainless, I would have just missed meeting you while you were a student. I had a friend who graduated from FAU in Ocean Engineering in about '75 and then later worked closely with Dr Bill Hart as both a sponsor of his research work (mid-80's) and later simply as a friend.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Frunobulax
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Re: Just prescribed Clonazepam - what should I know?

Post by Frunobulax »

Stainless wrote: "Stopping drugs like Clonazepam is a real mess" is more accurate.
Oh yeah. Been there, done that, got the t-shirt.

@meiatflask high-dose B12 (at least 1000 micrograms a day, plus folate and biotin) is worth a try. Iron is fairly low, especially considering that ferritin goes up with inflammation so you could be fairly deficient.

You took a lot of aspirin, which damages the neurotransmitter producing gut bacteria, so gut health is a bit of an concern. I do believe in an anti inflammatory diet (low carb, high omega 3, no vegetable oils), but it takes a few months to kick in.

meiatflask
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Joined: Sat Aug 10, 2019 10:29 pm

Re: Just prescribed Clonazepam - what should I know?

Post by meiatflask »

@frunobulax- thank for the post. A couple questions / comments.

1- This is the first time I have heard of B12. Tell me more. Is there a reference or website I can read more about?

2-same question about biotin.

3- I take one tablet of folic acid daily, have been for decades, long before I had RLS. I believe this is the same as folate. But I had never heard any ties that it helps RLS. Again, info?

4- as to aspirin, not sure what you mean here, I take one baby aspirin every other day. Is this a lot? Or problematic?

Back to the clonazepan, I took 1mg first day back down to 1/2 on day two. Quite honestly, I felt a bit high both days. I was then traveling to visit family, so I switched back to gabapentin for the trip (still visiting now) but plan to try 1/4 clonazepan when I get back on Tuesday.

Frunobulax
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Re: Just prescribed Clonazepam - what should I know?

Post by Frunobulax »

Vitamin B12 is a crucial vitamin required for a chemical process called methylation. It's responsible to metabolize homocysteine (bad) to methionine (good) and to get rid of nitrosative stress (NO buildup). It is mostly contained in meat, specifically animal livers so we don't get a lot of that in our diet. Symptoms include some fairly severe neurological symptoms if you are deficient. Google for more information :)

Bottom line: High doses of B12 can have a significant effect, and it's safe to take. Get 1000 microgram tablets and take one per day. Either you'll have an effect within a couple of days or not :)
Biotine and folate (=folic acid) are both used up in those processes too. So if you add B12, it will start converting homocysteine and nitrosative stress and in the process use up your folate and biotine reserves. Folate itself is not tied to RLS, but the B12 requires it to work its magic.

Aspirin: In the last 10 years a lot of people started to care about our gut bacteria. They produce tryptophane and serotonin, both neurotransmitters, and a lot of fatty acids that your immune system needs. Bottom line, damage there can lead to autoimmune diseases and inflammation. Aspirin and many other drugs (especially antibiotics and antidepressants) are harmful to your gut bacteria, as are lectins and other antinutrients, leading to leaky gut, leading in turn to immune system malfunctions (autoimmune disease). I do believe that RLS is inflammation related, so I think it's important that our gut microbiome is healthy.

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